Endometriosis - what is it and what can you do?

Endometriosis occurs when tissue similar to the endometrium (lining of the uterus, or womb) grows outside the uterus. The lesions or implants can grow anywhere in the body. However, they are most commonly found in the pelvic area (between the hips) and in or around reproductive organs.

These lesions respond to hormones and grow and bleed, causing inflammation, pain, heavy periods, and sometimes infertility. Many of the symptoms of endometriosis are tied to the location, size, and depth of lesions.

This article reviews endometriosis lesions, what they look like, their location, and their types. It also covers the difference between endometriosis and adenomyosis, endometriosis staging, and how to find a specialist.

What Do Endometriosis Lesions Look Like?

Endometriosis lesions are patches of endometrial-like tissue that can differ in size and color. Some are small, flat, or raised and grow superficially in the pelvis (between the hips). Others grow deeper and look like nodules or growths.

Color

Endometrial lesions can be clear, brown, black, blue, red, or white. The black lesions are sometimes described as powder burns or gunshot lesions.

Location

Endometrial lesions are often found in the pelvic area (between the hips) near the uterus and the peritoneum (lining of the abdomen and pelvis). They can also grow on or around structures of the female reproductive system, such as the ovaries or fallopian tubes. Sometimes, they are found in or on the:

• Ligaments in the pelvis

• Bladder or urinary tract

• Intestines

• Rectum (the end of the large intestine or colon, ending at the anus)

• Brain, liver, lungs, or eye (very rare)

Size and Depth

Endometrial lesions can vary in size and are typically characterized as either superficial (shallow) or deep.

Types of Lesions

There are three types of endometriosis lesions that are differentiated by their location and depth.

Superficial Peritoneal Lesions

Superficial peritoneal lesions are the most common. They are small, flat, or raised patches found on the peritoneum.3 Around 80% of all endometriosis lesions fall into this category.

Peritoneum The peritoneum is the tissue in the pelvic cavity. It covers the reproductive organs, digestive tract, and liver.

Endometriomas

Endometriomas are a type of cyst most commonly found on the ovaries. When this lesion bleeds into the cysts, it creates a thick brown fluid, which is why they are also called chocolate cysts.

Deep Infiltrating Endometriosis (DIE)

Deep infiltrating endometriosis (DIE) is aggressive and affects 5 millimeters (mm) or more of the tissue. It grows deep in the peritoneum and looks like nodules or growths in the affected tissue.

Sensation

The most common symptom of endometriosis is chronic achy or cramping pelvic pain. Endometriosis can also cause:

• Heavy menstrual (period) bleeding and cramping

• Pain during or after sex

• Painful urination

• Painful bowel movements

• Infertility (not able to get pregnant)

• Stomach problems

Endometriosis vs. Adenomyosis

The endometrium lines the uterus (womb) and thickens during your menstrual cycle to prepare for a possible pregnancy. When pregnancy does not occur, part of this lining sheds, causing menstrual bleeding (a period).

Endometriosis occurs when endometrial-like tissue or lesions are present outside the uterus. They react like the uterus lining during your period or menstrual bleeding. They grow and bleed, causing inflammation, pain, and heavy menstrual bleeding.

Adenomyosis is similar to endometriosis in that it commonly causes heavy menstrual bleeding and painful periods. However, the misplaced endometrial tissue stays in the uterus and spreads to the myometrium (uterus muscles).

Staging

Staging is determined following surgery. According to the American Society for Reproductive Medicine (ASRM), endometriosis stages are as follows:

• Stage 1: Minimal small lesions with no scarring

• Stage 2: Mild with more lesions but less than 2 inches of scarring

• Stage 3: Moderate, with increased lesions that are deeper and may create cysts in the ovaries, as well as scar tissue around the fallopian tubes or ovaries

• Stage 4: Severe, with multiple lesions, possibly larger cysts, and scar tissue that may have developed between the uterus and lower intestine and around the fallopian tubes and ovaries.

Treating Pain From Endometriosis Lesions

Treatment for endometriosis lesions depends on the type and location of lesions, symptom severity, the patient's desire to have more children, the patient's age, and their overall health. It can range from lifestyle modifications to surgery.

Lifestyle Modifications

Lifestyle changes that may help with endometriosis include:

• Eating an anti-inflammatory diet

• Drinking plenty of water (avoiding dehydration)

• Exercising (walking and swimming are good options)9

• Avoiding large amounts of caffeine or alcohol

• Practicing stress reduction

Hot or Cold Therapy

You can try a heating pad, warm bath, hot water bottle, or heat patch to relax tissues and stimulate blood flow.6

Heat Patches Heat patches designed for menstrual pain are available over the counter (OTC). You can wear them all day, which is helpful when you are on the go. Keep an eye on your skin to ensure it doesn’t get too warm.

Cold therapy utilizes ice or cool clothes to decrease inflammation or swelling. Apply ice to the painful or inflamed area for 15 minutes several times a day.

Ice Pack Skin Safety When using an ice pack, it’s best to place a thin material between your skin and direct ice.

NSAIDs

When approved by your healthcare provider, you can try the following OTC nonsteroidal anti-inflammatory drugs (NSAIDs) to help with the pain:

• Advil, Motrin (ibuprofen)

• Aleve (naproxen)

Complementary and Alternative Treatments

Complementary and alternative treatments that may provide relief include:

• Acupuncture

• Chiropractic care

• Supplements, including vitamin B1, magnesium, omega-3 fatty acids, cinnamon twig, or licorice root

• Isoflavones

• Boiron, Naturopathica (arnica) cream or pellets

Topical Medications

Topical medications come in patches, creams, or gels. Sometimes placing these medications on the lower back can help decrease inflammation in nerves such as the sciatic nerve.

These medications decrease swelling or numb the area with lidocaine and include:

• Aspercreme (trolamine salicylate)

• Bengay (menthol, camphor, or methyl salicylate)

• Icy Hot (methyl salicylate-menthol)

• Voltaren (diclofenac)

• Salonpas (methyl salicylate, menthol and tocopherol acetate (vitamin E), and camphor)

Hormone Therapy

Endometriosis lesions often resolve with hormone therapy. The goal is to reduce the growth of new lesions and regulate the menstrual cycle.3 Types of hormone therapy include:

• Birth control (for those who don’t wish to become pregnant)

• Gonadotropin-releasing hormone agonists (GnRH)

• Aromatase inhibitors (second or third line of treatment combined with one of the above)

Research Limitations Some scientists have called for further research to help fully understand the role of oral contraceptive pills in managing endometriosis pain. One review pointed out that the research quality of evidence is low, the trials were small, the researchers had poorly documented participant satisfaction, and there were possible biases.

Medical Interventions

If the pain is severe or progressing, your healthcare provider may suggest the following:

• Prescription anti-inflammatory or pain medications

• Nerve blocks

• Muscle relaxers

• Vaginal Valium (diazepam)

• Injections, such as Chirocaine (levobupivacaine) or Botox, BTXA, Dysport (onabotulinumtoxin A)

• Surgery

Immediate Relief Options If you are looking for immediate relief, try one of the following options:

• Topical medications

• Hot packs

• Cold packs

• Warm bath or shower

• OTC pain reliever

How to Find an Endometriosis Specialist

Endometriosis specialists are obstetrician-gynecologists (ob-gyns) and surgeons with access to modern surgical equipment. This includes robotic surgery or laparoscopy (minimally invasive surgery). They usually work in medical centers, teaching hospitals, or private practices that utilize gynecological surgeons.

Questions to ask yourself when looking for an endometriosis specialist include:

• Do they have experience treating endometriosis?

• Do they listen to your concerns and involve you in decisions?

• Do they imply there is a definitive cure for endometriosis (there is no definitive cure, only treatments)?

• Do they rule out a diagnosis based on tests alone (definitive diagnosis is made with surgery)?

• Have they removed endometriosis lesions?

• Do they have access to state-of-the-art surgical equipment?

• Do they work with other healthcare professionals, such as physical therapists, pain specialists, or other surgical specialties?

• Do they explain why they suggest specific treatments?

Self Advocacy It’s important that your provider listens to your concerns, shows respect, and works with you as a partner to develop a plan. Early diagnosis and treatment can help prevent complications, including infertility. Being your own advocate is always a good practice and may include getting a second or third opinion. This is especially true if you feel your healthcare provider is dismissive, has a poor attitude, or does not include you in care planning.

Summary

Endometrial (endo) lesions are tissue similar to the endometrium (lining of the uterus or womb) that grow outside the uterus. They can grow anywhere, but are most commonly found in the pelvis (between the hips) or around reproductive organs.

Three types of endo lesions are categorized by their location, invasiveness, and depth. Staging is completed after surgery based on the number of lesions, scarring, location, depth, and size.

Treatment ranges from lifestyle modifications to surgery depending on symptoms, future pregnancy intentions, and overall health.

Source: Verywell Health